Lost Within the System – What Role Does Headway and the 3rd Sector Play?

Dalia Levi and Pippa Hodson Headway SELNWK & King’s College Hospital Assistant Psychologists/Early Intervention Coordinators/Social Rehab Coordinators

Headway UK

Regional affiliated Headway Groups

•  Nurse Led Helpline •  Awareness/education/preventative projects •  Information leaflets (professionals and

families) •  Emergency fund for families •  Consulting on guidelines for ABI

management (e.g. NICE guidelines)

•  Over 125 groups all over the UK •  All very different •  Support groups for survivors and

family and friends •  Psycho-social rehabilitation centres •  Community support •  Early Intervention (Headway SELNWK)

Who are Headway?

“To promote understanding of all aspects of brain injury and to provide information, support and services to people with acquired

brain injury, their families and carers.” Headway UK Mission Statement

Early Intervention Role

Part of the the Brain Injury Team at KCH, Denmark Hill.

•  Supporting families in the acute stage: ▫  Acting as a listening ear ▫  Giving information, advice and support – benefits/legal/

signposting ▫  Headway emergency fund if appropriate

•  Attending Kings Brain Injury team follow up clinics: ▫  Giving information about Headway services ▫  Making referrals where appropriate

•  Attending MDM at Frank Cooksey Rehabilitation Unit ▫  Making direct referrals to Headway SELWNK service

where appropriate

Importance of Supporting Families in the Acute Stage Continuity of care – Headway are present from hospital setting to the community

•  Being a point of contact for families while in hospital and after discharge.

•  Providing brain injury information, advice and support, to families and patients.

•  Managing expectations - looking towards life once back at home, after specialist care in hospital.

•  Being a communication channel between services.

Importance of Attending Kings Brain Injury Team Follow up Clinics:

• Changes not anticipated during hospital. • Reviewing how people are getting on outside of

the hospital setting. • Offer support with social issues that may not

otherwise be addressed. • Address issues around social isolation, low

mood, lack of independence, financial and practical issues etc…

Importance of Attending MDM at Frank Cooksey Rehabilitation Unit (I)

‘Currently, rehabilitation services in the NHS are predominantly focussed on promoting

independence in personal daily life’ (Tyerman & Meehan, 2004.)

•  Headway address psycho social issues after brain injury, not just impairment-based issues.

•  Headway actively make contact with people with limited support who may be at risk of social isolation.

Importance of Attending MDM at Frank Cooksey Rehabilitation Unit (II) “….units are finding discharge to the community difficult, mainly because of poor collaboration from social services

or because services are disjointed” BSRM, 2008

By actively searching out people who may need our help and making referrals directly to our services we are:

•  Reducing the reliance on social services to identify whether people have psycho-social needs.

•  Reducing the risk that people who may need our services won’t be identified.

•  Identifying if services have not been started after discharge.

•  Assisting people to access the services they need if there are any problems getting things set up.

Importance of Attending MDM at Frank Cooksey Rehabilitation Unit (III)

•  Headway help by bridging the gap between discharge and waiting for community team to begin therapies

•  Headway can be on the end of the phone or make home visit during this time so people are reassured by having some contact with someone.

Outcome measures for FCRU, Lewisham. (NHS Improvement, 2010).

Adaptation of Chamberlain’s (1988) suggested framework for a four-phased service - Headway (represented in blue) offers a continuum of care, beginning early and permeating both within and between phases of rehabilitation

Society and Culture

Maintenance and Support

Community-based rehab/

Specialist unit

Inpatient rehab

Acute Care

•  ‘Rehabilitation in the community …should move progressively from formal therapy to a guided and supported resumption of chosen activities over months or years.’ (Turner-Stokes, 2003)

•  ‘There should be recognition of the need for life-long contact to meet the changing clinical, social and psychological needs of patients and carers.’ (Turner-Stokes, 2003)

•  “Community brain injury services should guide and support persons with significant brain injury in developing alternative leisure and social activities, in liaison with local voluntary organisations” (Turner-Stokes, 2003)

Importance of Maintenance and Support

The Role of Headway Centres in Enhancing Quality of Life After TBI

Study findings:

•  There is the need for long term support over an unspecified continuum for the family and the survivor.

•  An understanding environment allows individual needs to be addressed which encourages independence.

•  Centres help with the need for a social outlet. •  Peer support plays a valuable role. •  People benefit from having this structure and boundaries after rehabilitation.

•  Headway provide continuum of care, revealing a lengthy process of adjustment towards a new self, a new role and a new life

(Glover, 2003)

Importance of Headway Day Services- HW SELNWK Service User Perspective

A chance to share experiences

•  Empathy from people who have been through what you have •  A chance to share information and stories with one another •  Everyone is as an equal and you don’t have to hide your

problems or wear a mask

A positive environment

•  It’s therapy without realising it •  You can look back and see how far you’ve come •  Lots of encouragement and help from staff and fellow members •  Treated with respect and care

An opportunity for life after brain injury!

Life After Brain Injury… Beyond Headway?

Gaining Independence

Linking with other voluntary organisations and community resources who can offer:

•  Leisure opportunities • Educational opportunities • Volunteering opportunities •  Socialising opportunities

Back to work •  ‘Interventions that focus explicitly on enhancing

prospects of return to work are viewed as a vital component of brain injury rehabilitation.’ (Tyerman & Meehan, 2004.)

•  ‘With the exception of a few specialist vocational programmes, NHS services do not currently have the resources or experience to provide ongoing support in the workplace, and any such support is likely to be time-limited.’ (Tyerman & Meehan, 2004.)

Vocation rehab services barriers (2011) •  Recently reported barriers to the development of vocational rehab service:

(Playford et al., 2011) •  However there are some vocational providers in the independent

or voluntary sector e.g. Attend ABI, London

Summary

• Non-medical, face to face support for families in the acute stage

• Continuity of contact with service users and families throughout their journey

• Offering communication channels within and between services

• Addressing the social side of brain injury •  Promoting independence • Enabling re-engagement with life • Offering long term support

The final frontier -Society and Culture

• Hidden disability • Discrimination •  Lack of understanding •  Funding cuts

Do you think there is a role for the third sector to influence the perception of brain injury in society and culture?

BRSM. (2008). Neurological rehabilitation a briefing paper for commissioners of clinical neurosciences. Royal College of Physicians. Retrieved from http://www.bsrm.co.uk/publications/NeuroRehabBriefing%20Paper-Revised-nov09June10%20_2_.pdf

Glover, A. (2003). An exploration of the extent to which attending Headway enhanced quality of life after traumatic brain injury. Disability and Rehabilitation, 25(13), 750–760

Headway UK website: www.headway.org.uk

NHS Improvements. (2010). Improving post hospital and long term care: case studies from the stroke improvement programme projects. Accessed http://www.google.co.uk/url?sa=t&rct=j&q=&esrc=s&source=web&cd=2&ved=0CCcQFjAB&url=http%3A%2F%2Fimprovementsystem.nhsiq.nhs.uk%2FImprovementSystem%2FViewDocument.aspx%3Fpath%3DStroke%252FNational%252Fwebsite%252FGoing_up_a_gear%252FPost_Hospital%255B1%255D.pdf&ei=er_5VJebBKGL7Abm_IG4Dw&usg=AFQjCNGER-pUYF2Nqu7spK7QxtvxJPG91A

Playford, E.D., Radford, K., Burton, C., Gibson, A., Jellie, B., Sweetland, J., Watkins, C. (2011). Mapping vocational rehabilitation services for people with long term neurological conditions: summary report. Accessed http://www.ltnc.org.uk/download_files/final%20reports/April%2012/2012/2012/Vocational%20rehabilitation_Final%20report.pdf.

Turner-Stokes, L. (2003). Rehabilitation following acquired brain injury national clinical guidelines. Royal College of Physicians.

Tyerman, A., & Meehan, M. (Eds.). (2004). Vocational assessment and rehabilitation after acquired brain injury: inter-agency guidelines. Royal College of Physicians.

References